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Posted 3/17/2014 6:43 PM (GMT 0)
Hi all,

I have a question please. If you are taking Lasix and Aldactone for Ascites, when and for what reason would you need paracentesis? Is it because the medication stops working after a while or other reasons? Thanks you!

Lena
Posted 3/17/2014 8:21 PM (GMT 0)
Good to hear from you, lenamarie. Mike had to adjust his Lasix all the time. They set up a chart. If he gained the dose went up and if he lost weight the dose went down. At just the right balance he stayed pretty much okay. He had fluid in his legs up to his thighs and had to stay off his feet. He did not have the ascites that some folks have that requires paracentisis.

There is one more problem added in here in some cases called hyponatremia. Look that one up....too little sodium in the cells. They limit fluid when the sodium labs come back too low...the body holds on to the sodium it has the keeps the cells all puffed up instead of fluid moving back and forth in and out of the cells with all the nutrients they need.

Is your doc monitoring you?

When Ziff logs on today, and I'll send him a quick email, he will tell you that they solved his constant paracentesis draining with a TIPS procedure that has worked like a charm for years.

Best to you,

Mama Lama
Posted 3/17/2014 8:35 PM (GMT 0)
Thank you Mama Lama,

My husband just had his 3-month check up with his Hepatologist. I was the one that brought up the fact that he has been consistently gaining weight but he has not been eating like he should be gaining weight. Then I recently saw a photo of him and his face looked so skinny even though he had been gaining and this was not normal for him. Then I knew probably he had Ascites. So the Hepatologist placed him on the meds. He has lost 7 pounds in 48 hours since starting the meds.

So, I guess so long as the meds are working or another condition arises he will not need paracentisis?

Thank you as always for all your help!

Hugs,

Lena
Posted 3/17/2014 10:34 PM (GMT 0)
Hi Lena, Sorry about the problems he's having with ascites. The when and why a need for paracentesis has a couple answers. When: Complications like too much fluid causing pressure on his internal organs, Hard to breathe and so on. Fluid can also get pushed into the lungs. The pressure in my abdomen became so much that it pushed my intestine into my belly button, causing a golf ball sized hernia.

The fluid can be sometimes seen as a "beer belly" or a "pregnant look" in cases like mine. Sometimes it's less obvious due to the fluid getting trapped in tissue and spread evenly (Like edema). That type is often where diuretics work best. A sonogram done by a radiologist can easily detect fluid in the abdomen. It tends to settle in pockets that are linked to each other. The tissue type dispersed ascites (there is a technical name, just forget) is difficult to see through imaging. Again, it's evenly spread.

Doctors tend to stray away from Paracentesis. It's always better to use non evasive forms of medicine when dealing with liver disease, Particularly with a toxic mix of fluid already in the body. Sometimes the area where the needle is inserted to extract fluid wont heal and weeping of fluid can occur or possible infection. The doctor and the radiologist must work closely to insure the needle is inserted just in the right spot and the right depth to not hit other organs. These two issues alone are enough to make most doctors nervous about the procedure.

Try talking to his doctor about how much you can increase the diuretics at a time. Maybe half a pill here or there might do the trick. As ML said "It's a balancing act and most times the meds will be adjusted multiple times to get it right". Being patient is essential. You can do damage to your kidneys by messing with the meds yourself. Hope this helps. I'll check back later with you.


Ziff
Posted 3/18/2014 12:32 AM (GMT 0)
MamaLama,

No problem, I can only imagine how hard it is to keep track of everyone. I appreciate all the help you give.

Ziff,

Thank you so much for that clarification. So far so good with the medications, as they appear to be doing what they should. 7 pounds lost in 48 hours. Guess we will have to see how it goes since this is new for him.

Thanks so much for all your help.

Lena
Posted 3/18/2014 4:17 AM (GMT 0)
While its true Drs don't suggest paracentisis unless its necessary, as in the case of intractable ascites, when it does become necessary its like a god-send. At least it was for me, to feel all the pressure and excess "filling" leave my body and then to get up and walk out feeling lighter and in less pain, well lets just say, I loved having the procedure. I had it 4 times total. Each time I saw a gastro who specialized in the procedure and who did 100's of them a month, not my regular Hep.

If the diaretics aren't doing the job, and the ascites is judged intractable, don't worry at all about a parcentisis, they really make you feel so much better. Afterwards I was able to control it with diaretics, but there was just so much, liters and liters, that it needed help in the beginning.

BTW, I have no detectable ascites at all today!

-K

Post Edited (Kierstin) : 3/17/2014 10:21:47 PM (GMT-6)

Posted 3/18/2014 12:10 PM (GMT 0)
Kierstin, It does feel great to have that pressure off. I know the feeling your describing all to well. The pain is no worse than a bee sting but that tubing was a very uncomfortable feeling. I sometimes had to shift from side to side to allow the fluid to drain into the area where the suction was placed.

After having TIPS done my Hep. doctor said he would no longer allow paracentesis unless it became critical. He said the problem with doing so many paracentesis procedures is that it can eventually lead to the body being unable to control the ascites through natural processes, Compounding the issues basically. The TIPS didn't take effect immediately, It took time for my body to adjust to doing it's normal job. So I can see the logic behind what he was saying.

Our bodies are truly well designed. It took me going through this horrific experience to see just how beautiful and well orchestrated everything is. Not a recommended way of taking anatomy courses although I might add.



Ziff
Posted 3/20/2014 7:07 PM (GMT 0)
Lena,
How is Jeff doing today? I am interested in the weight gain post TIPS, as well. Have you figured out what transplant center you want to try to list with yet?

I preface with this. My husband wore the same size jeans since high school. And he is 63. has not been put on diuretics yet. But he also has gained a lot of weight since TIPS. about 25 lbs in a year. We have read the side fx of Xifaxan. Since his weight and mild-mod edema in legs came on with Xifaxan, I am pretty sure that is at least "part" of the culprit. And he eats less now.

Themister has no ascites, per his tests and the doctors at Mayo. They all think it is less exercise, etc. But he was on treatment and was not that active for over a year prior to TIPS, and recouped with no big weight gain.... so, I don't know? His legs and ankles are swollen much more the last couple of weeks, and he has an inner tube type look around the middle since last year. He never had this prior. His face is thinner. More drawn. But, they say he has no ascites.

Another quirk on the weight thingy. He lost 10 lbs in three weeks after that seizure. And he has not gained that back. But his HE has been absent for about 7 weeks now, and that was magic! And I don't care what he looks like, as long as HE is gone. But he does. Big hugs,
Posted 3/21/2014 12:13 AM (GMT 0)

Hi themiz,

He is doing okay today.  Here is what I know for sure.  Jeff weighed 219 on or about December, 2012.  This was about the time of diagnosis.  I don't have my records with me right now, so not sure exactly how much he weighed at time of TIPS, which was February 2013, but his weight last week was 241.  I had noticed from my records that everytime he went to the doctor and got weighed, he gained two to five pounds each time but he was eating normally, not eating too much and actually eating better than he ever had.

Then I saw a recent photo of him and he noticed it too that although he had gained weight, his face did not look like it usually would have at that weight. It was thinner.

When he saw his hepatologist last week and I brought it up, he felt his stomach (not sure he could feel anything) and said he would put him on the diuretics.  Seems he just took my word for it and ran no tests.

He took his first pills Saturday morning and on Tuesday morning, he had lost the 11 pounds and that day he was scheduled to have his first EGD to check for bleeding varicies, so that morning he did not take any of his prescriptions, so no diuretics.

Then Wednesday morning when he weighed, he had gained back 2 pounds.  So, that confirmed to me that it is all water and he needs the diuretics because it came back so fast.

I am at my moms today and tonight because she had foot surgery so I do not yet know what he weighed this morning.  I'm an only child and my dad passed away a little over four years ago, so I get to take care of everyone lol.  Keeping my sense of humor :)

Oh and he only had very small varicies that could not and did not need to be banded.  His Hepatologist now put him on Nadolol to see if that will help his small varicies from getting bigger.

I should also mention, Jeff had edema when he was still working, but now since he is home, it is rarely noticable.  He is on Lactulose, but that's it for the HE and that seems to be working fine for now.

I am glad themister's HE is gone, but all that about the weight loss and that disappearing is strange.  I good strange!  I guess the seizure did all that? 

Sounds like you are doing much better now with the HE gone and I am so happy for you!

Hugs to you!

Lena

Posted 3/21/2014 1:44 AM (GMT 0)
Oh and right now we are checking into USC for his evaluation.
Posted 3/27/2014 9:10 PM (GMT 0)
A little update:

It turned out the Lasix and Aldactone worked so good, he lost 17 pounds in a week and a half. Then a few days ago he started vomiting and not feeling well, so I called the doctor and now he wants him to only take half a dose a day for a month and then get some blood work done to check out how he is doing.

But, what a difference, his stomach shrunk in size and it went so fast.

He did also stop taking the Nadolol because it also was making him so nauseous and made him vomit. That was okay with his Hepatologist and to me he kind of expected it to go that way.

So, we will see how all this goes, thanks so much!

Lena
Posted 3/28/2014 1:04 AM (GMT 0)
Thanks for the update, Lena. I am always glad to hear the updates to our dilemmas. It really helps me. That was a lot of fluid that came off Jeff! Sorry he is feeling punk, but glad to hear you have some of the water weight controlled. I do hope Jeff get's listed soon. Why did UCLA say he was too early? I know CA transplant centers need really high MELD to transplant, but what number will they list him?

Things still good here, and we are getting out doing fun things. That is something we had not been able to do much of last year.

Big hugs....
Posted 3/28/2014 4:29 PM (GMT 0)
Hi themiz,

UCLA said his MELD score was not high enough. After I got more educated, I did learn that he should not even have been evaluated at that time because of his lower MELD score. Live and learn.

Yes, I have heard that also about California need high MELD scores to transplant. I think once he gets listed I will probably work at getting him dual listed somewhere else. But, Jeff's Hepatologist seems to think that Jeff has so many other issues that will bump him up the list, so we will see. It's just the insurance company that is holding us up now as USC has accepted him for evaluation.

I am so glad life is better and more fun for you both!

Take care!

Lena
Posted 4/2/2014 6:16 PM (GMT 0)
hi,,
i am dual listed at UCLA and KUMED just to give you an idea about my experience at ucla..Dr .Saab is a wonderful Dr. and got me an meld exception because of HE, coma, yet my meld was still low tipps was a disaster for me..i am now about half way down on the t/p list and except in extreme cases UCLA transplant way up in the 30-35 area look to the east for another center KUMED t/p's at 22 and i am close to the top of the list,,one thing ive learned through all this is dont ask what # you are on the list it will either get you depressed when you drop a few back,or give you false hope when you move up the list..because being # 1 on the list doesnt mean your next...everything is done in a computer program by UNOS So if a donor liver comes up but matches you and lets say your at # 15 you will get to jump ahead while # 1 still waits..look at KUMED Kansas as well as Memphis methodist,st.judes Kansas call them and ask what # they t/p at and with a meld of 16 he should be able to be listed easy enough and most of all best of luck ..thinking good things for you....
Posted 4/2/2014 6:38 PM (GMT 0)
Thank you waitin on a t/p,

I appreciate you sharing all that information with me and what good advice. One question I have is, did your insurance company have any problem paying for two evaluations? I ask because we still have not heard back from Blue Cross for approval on this one, and then to ask for another...

All my best to you. Thank you!

Lena
Posted 4/2/2014 8:49 PM (GMT 0)
i have blue cross also and i didnt have any problems .call the t/p center you think will be good for you ,i still live in califonia but am stranded in kansas in a holding pattern lol.. i believe my best shot is here. my good buddy was at scrips in san diego but opted to go to memphis methodist he had a meld of15 but had a lot of other stuff going on he is now 2 yrs post t/p and feeling great.call around ask ,what # do you transplant at,how is your waiting time.how many t/p of the liver have you done THIS YEAR. you can not be duel listed in the same region .please keep in touch
good thoughts to you and yours
waitin or mark
Posted 4/2/2014 9:13 PM (GMT 0)
LM,

Where are you on the list is a misnomer. There is no ONE list.

There are MELD scores. And there are "other factors" that lead them to understand who will best survive after each unique life saving surgery.

They "triage" the grafts to get to the sickest for whom this graft will be the most perfect fit.

They often take patients with acute liver failure before those with chronic liver failure. So the #1 person could be bumped as you see it.

They look at more than just blood A, B, AB, O matching. There are other immune factors in the blood that they check...all those vials were checking for stuff I don't understand...IgE, and such.

Weight of donor and candidate are best matched. Sex, while not a deterrent, some research shows a mis-match leads to poorer survival rates.

Some think that mismatched race increases rejection.

Age of donor may make a difference. The livers while viable tend to be more fatty.

We discussed it before Mike's transplant and he would have taken an "older" liver instead of death.

Some centers do take into consideration time on the list between similar MELD scores.

And in my heart, I think they take into consideration whether the patient has the home support and caregiver plan that will help them during a VERY difficult recovery.

The docs have noticed a disparity in Mike's bile ducts...where it joins his own system, the outgoing duct is larger than his own...so they have fashioned a kind of kink with stitches or something. It always causes a second look to his MRIs...and the decision is always the same...a bit of a mismatch. But so far so good. The plumbing his holding.

They test the donor livers and sometimes a desperate patient will agree to take and HIV or HVB infected liver rather than die. We would have. There are problems with transferring other diseases from donor livers. One of our members acquired CMV at transplant.

The UNOS system looks at the center first for a recipient of a donor liver, then to the region, and then nationally. Liver is only viable for a certain time, but they will fly the liver somewhere before letting it go if there is no matching candidate in the region.

This is such a tense time. It is sort of out of the patient's hands...be very very positive with your TP team! There is sure to be human factors in these decisions.

Hugs,
Mama Lama
Posted 4/2/2014 9:15 PM (GMT 0)
Thanks Mark!

He has been accepted to go down for an evaluation by USC. He just got Blue Cross March 1 and I forwarded that information to USC to get approval from Blue Cross here in Idaho, but we still have not heard anything. I will be contacting them next week, if they don't contact us. After he gets evaluated there I will look into some other out of state transplant hospitals. Thanks for your recommendations, I will look into them :)

Lena
Posted 4/2/2014 9:20 PM (GMT 0)
Wow Mama Lama,

That is a lot of information they take into account and a lot to take in. I understand that waiting on the list can take a long while with ups and downs. At this point I just want to get him on the list. Why they are so slow to answer is really getting to me and I have to pause and breath so I don't get myself all upset.

I am glad the everything is holding up for Mike so he gets the call soon!

Thanks for all that information!

Lena
Posted 4/2/2014 9:44 PM (GMT 0)
I hope so too.

We packed and planned for that call. Kept the cell phones charged. Slept with the darn phones!!!

It takes over 2 hours to get to our center so we had separate everything ready to go...tooth brushes, and shampoo and the like. We were in Miami for about 3 weeks total I think.

Very tense time.

Hugs,
Carol
Posted 4/2/2014 9:49 PM (GMT 0)
Carol,

I can only imagine how tense it is. But thank you for sharing about separating everything, I had not thought about that, so I appreciate it. Something else to note in my notebook for the future :)

Hang in there!

Hugs,
Lena
Posted 4/2/2014 10:02 PM (GMT 0)
here is a good website for t/p centers very good info here hope it helps






im sorry i sent the wrong link ml can you make this hot...thanks
mark
http://optn.transplant.hrsa.gov/members/regions.asp

and this website full of info although pretty deep stuff
Scientific Registry of Transplant Recipients

Post Edited (waitin on a t/p) : 4/2/2014 10:06:23 PM (GMT-6)

Posted 4/3/2014 1:47 PM (GMT 0)
Thanks Mark!

I have been to that page a few times, got a lot of help navigating around that site from sweet Carol.

Appreciate the reminder and will go back and research some more. :)

Thanks again!

Lena
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